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Crohn's Disease Forum » Parents of Kids with IBD » Which drug should I try?


04-17-2017, 06:22 AM   #1
Mccarth
 
Join Date: Apr 2017
Location: Orillia, Ontario
Which drug should I try?

Struggling to find the right medication for my 15 year old daughter. Diagnosed with mild UC Last spring. Successfully used pentasa and salufalk for 9 months. Had a flare and suffered from pancreatitis. Switched meds to mezavant and had severe pancreatitis. Currently only using cortifoam while we figure this out but it makes her nauseous. Had stopped it for a week and flare is back.

The doctor says her disease shouldn't need a higher level drug to control but if she reacting to 5-Asa's we may not have a choice. Any advice is appreciated.
04-17-2017, 11:41 AM   #2
my little penguin
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Join Date: Apr 2012

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Have they suggested methotrexate?
Next level up drug but generally tolerated well .
Ds takes it with humira for Crohns
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DS - -Crohn's -Stelara -mtx-IVIG
04-17-2017, 04:27 PM   #3
Maya142
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Usually Methotrexate or 6MP/Imuran would be the next step. 6MP and Imuran can cause pancreatitis, so MTX might be the best option for her.

It's usually given by injection but can be taken orally. The injection is not at all painful - it's a teeny tiny needle. Some kids have nausea with it but Zofran can be given to help with that. Most kids tolerate it very well.

Most parents will give the MTX on Friday or Saturday nights so their child can sleep through the side effects (if they have any).

Poor kiddo!! It sounds like she has had a hard time!
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
04-26-2017, 10:22 AM   #4
JLOptimistic
 
Join Date: May 2016
Location: Calgary, Alberta
My 11 year old son, L was diagnosed with mild to moderate UC. We tried diet initially and then Pentasa and Salofalk as I was hoping that the 5-ASA's would work. They didn't and he ended up basically missing the first 2-3 months of this school year. His doctor said that there's a small % of kids that react to the 5-ASA's and L was one of them. Ended up putting him on a round of Prednisone and then a week into that started the Azathioprine with biologics as the next step if necessary. Knock on wood, he's had no issues, no side effects, a few iffy bm but few and far between and he's now at school regularly and has started sports again.

I completely understand not wanting to go up to a more serious drug, especially when their disease is considered mild, but I'm so grateful now that I did and wished I'd done it sooner to be honest as he got his life back. L's Dr actually told us that some "mild" cases end up needing the higher end drugs while some severe cases can be controlled with lesser drugs(Referencing UC, not sure about CD).

I hope you find whatever works for her soon!
04-27-2017, 11:41 PM   #5
Lady Organic
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could Pentasa enemas be a possibility?
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
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